I just read Catherine’s piece about a series of pump and insulin failures (It’s great! Read it!), and I had to shake my head in that oh-I-so-feel-you way.
I’m going on nearly two decades as a diabetic now, but Friday night was a first for me, and one of the worst blood sugar nights I have ever had. I had been trending insulin resistant for a few days — requiring on average about 22 units of insulin per day rather than the standard 14 or 15. This was not too surprising, as — well, I suppose I meant to write a piece announcing this, but it hasn’t happened yet, so here goes nothing– I’m pregnant, and the hormonal ups and downs lead to periodic changes in insulin requirements. Still, heading into Friday night, my insulin behaved like water, and I was just pumping it in with relatively little return on investment. By the evening, I had used some 25 units for the day.
Now, being pregnant, hyperglycemia is my bogeyman. Hyperglycemia is bad bad bad. And not just standard, over 200 hyperglycemia. I now begin to panic when I hit 130 mg/dL. So before bed, when I began to climb to 120, 130, I bolused excessively and walked in circles, trying to bring myself back down. I stayed up for an extra hour, waiting, walking, bolusing. Finally I was closer to 100 mg/dL, and went to bed, annoyed to have had to stay awake longer than desired.
To my chagrin, not an hour later, my CGM woke me up with its buzzing: HIGH. I cursed, got out of bed, measured myself. 139 mg/dL. Damn you, diabetes. Under normal, non-pregnant circumstances, I would bolus and go back to bed. Now, the risk of going up is too high, and I want to make sure I go down first. I left the bedroom, and proceeded to walk and bolus and wait and walk and bolus and wait and watch lame Netflix movies. Cursing diabetes all the way, of course. Another hour and a half goes by in a state of semi-sleepy frustration as my blood sugar resists going down. Finally, I’m heading back down below 120 mg/dL, and I go back to bed.
An hour later, again the buzzing. And the cursing. This time my CGM shows me headed up quickly. 130 mg/dL. I bolus a unit of insulin– which for me, under normal circumstances, is a ton of insulin, and would send me plummeting. But at this point in the night, I have already taken an extra three or four units of insulin trying to get down from 130, and I’m frustrated. I wait for ten minutes in bed, and measure again. 150 mg/dL. Shit. Now I enter panic mode. I take another unit and a half, recognizing how insane that would seem under normal circumstances, but at this point I would welcome a low. I get out of bed. Walk, bolus, wait, walk bolus wait. But this time I don’t hold stubbornly steady; I go up. And up and up. 180. 190. I wake up my husband. I’m impossibly tired, and crying, worried about what I am doing to the baby inside of me. He hugs me, assures me it will be okay, and starts running through the things I should be checking. Change your set. Change your insulin. I changed my insulin cartridge earlier that night, so I knew that wasn’t bad yet, but I changed my infusion set, and I primed my pump to make sure insulin was coming out of the tube.
Is this just insulin resistance? Is this the high-carb meal I ate earlier in the day? I suspect that contributed at first– but 8, 10 hours later would I still be digesting chips? And requiring so much insulin to do so? I have noticed in the past that if I stay awake in the night, I stay higher for longer and require more insulin than if I just bolus for a high and go to sleep– presumably my body’s hormones get all out of whack and I get a midnight version of the dawn phenomenon. Is that what this is? Am I sick? People were sick at work; maybe I’ve caught it and don’t know?
Walk, bolus, wait. I’m some 8 units in since the start of the night, more insulin than I normally take in half a day complete with eating. I keep climbing. Above 200. Occasionally, I start to head down, and I see a glimmer of hope. Then I just start climbing again. 239. Please forgive me, little baby, for what this is doing to you. The hours pass by. Stupid Netflix movies come and go. I’m hovering between 210 and 240 for hours. I am so damn tired. I wake my husband again. Nothing is working. Should we go to the hospital? Not yet, but I don’t know what to do. Did you change the insulin bottle? Did you try taking insulin with a needle? No, I should.
Somewhere around 4:30 AM, for the first time since I started using an insulin pump in 2005, I took insulin with a needle. I opened a new insulin bottle and took two units, right of the bat, which even in my sleepy state seemed crazy to me. But another hour goes by and I’m still 230. I take another two units. I seem to begin to budge, but only barely. 204. I sit there for another half hour. Two units. Now I’ve taken more insulin than I do in an entire day, all in one hellish night.
Finally, finally, finally, my CGM begins to run. And I feel myself begin to go down. 193. I am so happy to see you, 193. 185, 167. At 155, I get back into bed, praying that the oceans of insulin inside me don’t send me crashing. Part of me expecting that they will, and almost welcoming a low.
It’s 6:30 AM when I get back into bed. I have gotten a total of about two hours of sleep. I feel like shit.
At 7:30, I wake up, 69 and heading down. I eat. I get back into bed, squeeze out another half hour of sleep before waking up again, heading down. At that point I give up on sleep and decide I will just get up. The day passes in an exhausted set of couch-camping sessions and reading The 19th Wife, with my husband being the perfect amount of helpful and sympathetic.
And always the post-analysis. What the hell happened, and how can I avoid it in the future? Was it the high-carb meal? Hormonal periodicity? Crazy pregnancy? Staying awake? The fact that I was so frustrated? The insulin pump? The insulin bottle?
The insulin bottle change was the last I made before the tide turned, so that seems like an easy explanation to choose. But I don’t have an independent test, so it could be just that after so much insulin, my body finally reached the threshold it needed. Or it could be the passage of time was finally enough. Or the metaphorical fever broke. Or that meal was finally out of my system (12 hours later?)
Catherine mentions a flow chart; I have a list of things to consider when I am high that I keep on my phone and computer:
Things to consider if your blood sugar is high
Is it really?
Did you miscalculate food-to-insulin amounts?
Have you had too low a basal rate?
Did you exercise or move less than normal?
Did you eat or drink something that wasn’t what you thought it was?
Is the infusion set bad?
Is the insulin pooling?
You’ll note that checking the insulin itself is not on there; that is because in my two decades as a diabetic, I have not had a confirmed instance of bad insulin. I have had a handful of suspicions, but never a case where I am sure my insulin was bad. I attribute this to a few things:
1. I don’t travel much.
2. It’s never hot in San Diego.
3. Luck.
The morning after, I added three things to my list; it now reads:
Things to consider if your blood sugar is high
Is it really?
Did you miscalculate food-to-insulin amounts?
Have you had too low a basal rate?
Did you exercise or move less than normal?
Did you eat or drink something that wasn’t what you thought it was?
Is the infusion set bad?
Is the insulin pooling?
Is the insulin bad?
Is the insulin bottle bad?
Is the pump not working? Take injections.
I wish I had an easy in vitro test for the efficacy of the replaced insulin, so I could know. My best measure now will be observing insulin requirements over the next few days; if I continue to seem insulin resistant, then perhaps that is the root cause. If, however, I am back to where I was a week ago, perhaps my insulin had been sub-standard for the last week, reaching an awful climax in the night, the problem worsened by my earlier meal, my frustration, hormones, life, etc.
Thank God all that insulin didn’t make me crash on the other side. Thank God it was Saturday, and I didn’t have to work. Thank God I could wake my husband to both talk me off my emotional ledge and reason through what the response should be when I was too tired and distraught to think. Thank God Saturday night I slept without major issue. I hope and I pray I have not harmed the baby inside of me.
I suppose this is all just practice — when the baby comes out, I will have a new irrational black box to spend all night awake trying to fix!
as a recently retired diabetes specialist midwife ( and an admirer of President Obama’s courage and policies) I congratulate you in your excellent pregnancy diabetes management. I have never met a pregnant woman with Diabetes of any type who did not have some episodes of hyperglycaemia. Many women coped by putting their heads in the sand and needed a lot of encouragement. Years of ‘never being good enough’ can have that effect. Sounds to me as if you’ve been doing everything you could possibly do and your baby is very lucky to have 2 such conscientious parents. Keep up the… Read more »
I’ve been type 1 diabetic since I was 21. Unfair, huh? “But, I’m an adult!” The roller coaster ride that June (above) speaks is SO SO true! You have to stop chasing your numbers! Keep a journal instead of the tiny logs provided and write information down, based upon how you feel and what you’re thinking. So many things play a part in how you need to adjust your insulin. Relax a bit and test only once an hour (unless your dr says to do more frequently) when your numbers are off. Always follow a low with some long acting… Read more »
Dear Karmel, I’m writing this as a nurse who specializes in the care of pregnant women with Type 1 for 15 yrs. I know you’re under the care of someone, but when I read that you panic when your reading is 130, I felt compelled to write. I know how concerned you are for the health of your baby (you’re a mom!) but please know that even an occasional 200 is not going to harm your child. In fact, ALL of my pts have that and NONE of their babies have had problems. What you want to be careful is if… Read more »
Karmel I hope that you are feeling well and getting lots of reassurance from the doctors that your baby is doing well too. I am expecting our third son very soon and dealing with gestational diabetes for the third time. It has made me respect those with lifetime diabetes even more. While everyone’s situation is different I wanted to let you know that I have struggled with bizarre highs numbers throughout all three pregnancies especially at fasting and at night. It is stressful but both my sons were fine at birth and I am very hopeful about this one too.… Read more »
I have had Type 1 D for 50 years this past July. I was diagnosed the summer before my 12th birthday, in 1963. I had a successful pregnancy and a very healthy baby girl in 1978, long before CGMS, glucose meters, pumps. I did all I could for the time to keep my bgs as good as possible. I don’t believe that an occasional high day will hurt your baby. But, I’m guessing you’re just like me, you will stress at not being able to hit the mark that you feel you need to. And, the stress alone more than… Read more »
When are you due – you look huge already and didn’t look pregnant in Aug. Get some rest!
I just saw Karmel fainting behind the president.
Feel better, Karmel.
Take care.
Reading your post reminded me of the highs and lows of being a pregnant diabetic! From my experience the first 6 weeks required a dramatic increase in insulin, and then suddenly, at 6 weeks, there was a dramatic drop off and I needed only about half the insulin I would regularly take…and then even less in the subsequent months (despite eating more!). You sound as though you have a very good understanding of your diabetes. It’s my understanding that a high HBA1C prior to getting pregnant is the worry most doctors have…a few diabetic high days should not harm you… Read more »
Karmel, I am sorry to hear you went thru this! I too am a Type I Diabetic and 11 weeks pregnant. The blood sugar yo-yo effect is exhausting! I have been experiencing lows and rebounding highs for the last few weeks. It’s hard not to stress out about the possible effects that these blood sugars could be having on the baby. However, you seem to be pretty in-tune with your diabetes and you are making great strides in trying to control it. Stay positive and strong mama to be and just keep trying your best. Congratulations on your… Read more »
Karmel,
My mother fought type 1 diabetes all her life and lived to 78 years old. Your blog rekindles some of the trials she and we experienced. It was very hard on her and my family. I’m sorry about your difficulties at the White House today. Despite how I feel about Obamacare you are living life, as you should, to the fullest and it must have been exciting to be at the White House today. Please keep up the good fight.
Thanks.
Wes